Regina Holliday's Medical Advocacy Blog

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Sunday, August 13, 2017

One year ago today, I was
at the maker fair in Accident, Maryland. 3-D printing, children painting, and
Lego creations surrounded me.In this
maelstrom of creativity, I learned that Jess Jacobs had died.Funny, delightful, caring Jess was gone.

Yesterday, Jess's sister Lauren Jacobs
was able to visit the studio.I was
honored to show her Jess’s room.Lauren
remarked on how much Jess would have loved the room.I built a large display case full of Jess’s
art within the doorway frame to the adjoining bedroom.I think there is a kind of poetry in that.Jess lives on in a doorway between this room
and the next.

Another local artist named
Ashley Folk made the header on the case.She created a plaque that depicts the name “Jess Jacobs” in nails and
string. Nails and String: a perfect metaphor.Our Jess endured such pain in her 29
years.When I think nails, I think of smashed
thumbs.I think of the nail that went
through my bare foot at 10 years of age while walking.I think of Jesus on the cross.I think of nails and it leads me directly to
thoughts of shocking and surprising pain.I look at the name “Jess Jacobs” on this plaque and see so many nails.Each nail could represent a
treatment, a hospitalization, or another day of pain.

But then again, there is the string.This string glued firmly, intertwined around
all those nails to create the name “Jess.”For that is what Jess did.She
entwined us all.I met Jess on twitter
long before I met her in person.She was
one of the #HIT100 in 2013.She was a
powerful patient leader that represented so many in health information
technology without a voice.

This year during the #HIT100 voting in July, Ross Martin said
we should nominate Jess.When the list
came out Chuck Webster made 3-D printed key fobs for all of the 100 that wanted
one. When my fob arrived, I first let
it rest a few moments in #TheWalkingGallery of Lego. Jess helped make so many of those figures. Then I gave it to
Jess.I put a key ring on it and placed
it in the display case.It looked a
little bit lonely, so I put my husband Fred’s keys on the fob.

Under the keys and fob, there is a blue rose and a blue
button.The blue rose represents the thought
that Jess will always be with us.The
blue button means we always fight for patient access to data, just like
Jess.

Sunday, July 23, 2017

This is the seventh year of the Walking Gallery of Healthcare. We now number 432 members walking around the world with patient story paintings on our backs. We are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. We are providing a patient voice, and by doing so, are changing the conversation.

An artist or artists interviews medical professionals and lay individuals to form a patient centric narrative. The artist then creates representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” wears the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media.

As of July 2017, 432 unique Walkers have joined the Gallery wearing 476 jackets. The Gallery has representatives on six continents, but the majority of Walkers reside in the US. One artist creates the majority of the art, but new artists are frequently joining the movement. The Gallery is promoted heavily on twitter, facebook and personal blogs. Its widening appeal within the health conference community is creating a new space for patients at such events.

If you are interested in joining the Walking Gallery here is the info:

Wednesday, May 17, 2017

Cinderblocks 4: The Walking Gallery Gathers is an art and
medical conference that will be held in Grantsville, MD at Penn Alps Restaurant
and at Little Crossings by The Cornucopia Café May 18-20,
2017. I founded this event with the help of several other epatients
and I am happy to see it enter its fourth year. I am known in healthcare
circles as the artist that founded The Walking Gallery. I and 46 other
artists paint patients stories on the backs of jackets that people wear to
medical conferences. I see #Cinderblocks4 a continuation of the message
of The Walking Gallery and as venue that prizes the patient and provider in
equal measure. We will use our days at this conference to focus on
improving health care everywhere.

Your Friend, Regina Holliday

Founder of the Walking Gallery

Thank you to our Diamond Cinderblock Level
Sponsor:

May 17, 2017

PechaKucha Accident Visits
Grantsville! 7-9pm, The Cornucopia Café

Pechakucha is a fun & concise presentation style.
PechaKucha nights have 8-12 speakers who follow a 20 slides 20 seconds pattern.
We will have a fewCinderblocks
attendees presenting!

Thank you to our Silver Cinderblock level sponsor:

Cinderblocks4: Conference Day 1

On Thursday, May
18 we will meet
at 8:00 am at Penn Alps Restaurant and Meeting Center for breakfast in the
Alpine Room.

8:00 Opening remarks
are byRegina Holliday, conference planner and
founder of the Walking Gallery of Healthcare.

8:05-8:25 Paul Edwards, County
Commissioner for Garrett County will present on the state of the county and the
history of Grantsville.

Mr. Wilt holds a Bachelor’s
degree in Political Science from Frostburg State University.He went on to do graduate work in
Healthcare Corporate Compliance at George Washington University and then
obtained a Master of Health Administration from Capella University.He joined Mountain Laurel Medical
Center in 2010 and currently serves as the Chief Executive Officer.Prior to joining Mountain Laurel, Mr.
Wilt worked in sales and marketing.

Mr. Wilt helped evolve Mountain
Laurel Medical Center through community-based advertising.In 2011, he constructed the first
website dedicated to educating the public about Mountain Laurel’s mission to
serve Garrett County and the surrounding areas.He also led the effort to achieve Patient Centered Medical
Home Recognition from the National Committee for Quality Assurance (NCQA).

Mr. Wilt serves as Chair to the
Garrett County STEPS to Better Health Committee and he has served as Election
Judge with the Garrett County Board of Elections for over 15 years.He is a lifetime resident of Garrett County
and resides in Oakland.

9:15-9:35 Ashley Elliott,
Grantsville, “Addiction happens but so does recovery.“

9:40-10:00 Shelley Argabrite and John
Corbin, Garrett
County Health Dept, They will speak about digital
community engagement collaborative found at GarrettPlan.org

10:05-10:55 Angela Radcliffe, FCBHealth, a workshop on clinical research as a care
option where she teaches brainstorming techniques.

At Ameriprise, our goal is to help clients achieve the
full and rich life they have earned. With our exclusive Confident Retirement® approach we look at four
basic needs: covering essentials, ensuring lifestyle, preparing for the
unexpected and leaving a legacy. Together we will explore each to create a
comprehensive financial plan customized to your life. Then we’ll track your
progress and make adjustments as life unfolds. I’m committed to your success
and believe that when you take the right approach to financial planning, life
can be brilliant.

Jessica Wihelm

Woodmen Life

I began my career with WoodmenLife in 2016 as a Sales
Representative. I’m proud to represent a not-for-profit organization with more
than 125 years of financial strength. Our longtime commitment to our customers
and to the communities we serve is what sets WoodmenLife apart.

Felicia Schrock

Uses
patient-centered interdisciplinary approach to health care and care
coordination, utilizing patient values and goals, community resources and
benefits such as home based assessments, medication reviews, enhanced
monitoring, and expert consult among others.

Ranger Julia Musselwhite has worked for the Maryland Park
Service since 2006, beginning as an AmeriCorps volunteer with the Maryland
Conservation Corps and eventually earning full time ranger status. Her
career began near her hometown in Harford County, but she has been a Garrett
County resident since 2011 and is the current Assistant Park Manager at Rocky
Gap State Park in Allegany County. Whether for work, or in her personal
life, Julia enjoys time outdoors and helping others discover new opportunities
and adventures.

Lunch is at noon. Some
attendees will go on a walking tour with Ranger Julia.

12:50-1:20 Mary Anne Sterling PCORI-funded
project that speaks to many things the ePatient community holds dear. It’s
calledPatient
Priorities Careand the goal is
to align primary and specialty care to improve the health and healthcare of
older adults with multiple and complex health needs. A pilot project is already
rolling in Connecticut.

1:25-1:45 Heather
Hanline, Executive
Director of the Dove Center, will present on the correlation between health
disparity and trauma/sexual violence.

Hanline
holds a Master’s degree in Counseling Psychology and is a Licensed Clinical
Therapist.She has over 24 years
of experience in the human services field, working with trauma victims in a
variety of settings.For the past
19 years, she has followed her passion to end domestic violence and sexual
assault with the Dove Center, where she began as a counselor and has spent the
past 17 years as the Executive Director.She is a past recipient of the Governor’s Victim Assistance Award, for
doubling the number of individuals served by the Dove Center in her first year
of leadership.She also
spearheaded the building of the Dove Center’s combined counseling and shelter
offices, which now stands as a permanent symbol of safety and healing.She has written guest blogs for several
statewide organizations, and has originated many innovative programs within the
Dove Center’s programming.

1:45-2:00 Robb Fulks, Reading, PA will be telling his
Patient Story

2:00-2:25 Christopher
Elliott, Residential Lead for the State of Maryland, Grantsville

Joleen Chambers (Dallas,
TX) is a trained FDA Patient Representative (with an M.S. in Rehabilitation
Counseling) and a national advocate (member of Consumers Union Safe Patient
Project, National Patient Advocacy Network, board member of HealthwatchUSA) for
patients preventably harmed by unsafe and ineffective implanted medical
devices. At home in Dallas, TX Joleen is a board member for Leadership
Women, Dallas Black Dance Theatre and Undermain Theatre .

Her brother, Steven
Baker, is a career union millwright. In 2001, a criminal harmed him on-the-job
and his elbow received multiple fractures. In 2008 he was referred to a
respected national health institution for an ‘innovative’ new elbow replacement
implanted by the surgeon that designed the device. Just 4 months
later, the device was unsuccessfully ‘revised’ by surgically removing two
of the 4 components. Steven now lives in rural southeastern
Minnesota on the generational family farm while enduring unrelenting pain and
loss of function in the elbow.

The daily educational conference
session ends. Feel free to explore the grounds, rest and grab a bite to
eat before the evening program begins.

6:00pm to 8:00pm Dedication to those we
have lost in the past year at Salt and Pepper Studios

On
Thursday, May 18th at 6:00pm a dedication will be held at Salt
and Pepper Studios: the home of the Walking Gallery 189 Main Street in
Grantsville. Conference attendees and members of the public are invited.Refreshments will be provided and the
dedication is free and open to the public. Joseph Kim of Eli Lilly
will sing a few songs in memory of Jerry Matczak.Marsha Goodman-Wood will sing in memory of Jess Jacobs and
Dave Wilt.

Conference
Day 2,

On Friday, May 20th another conference day
begins! At 8:00 am we meet at Penn Alps Restaurant and Meeting
Center for breakfast and our general session.

8:00am breakfast in the
Alpine Room Opening remarks Regina Holliday

8:35-9:00 Renee Green, presenting on her
film project the
documentary Buzz One Four Impact
Documentary - Rescue & Recovery:About howthe Grantsville Community became
the first responders when a B52 with 2 thermonuclear bombs crashed on the
mountain in 1964 during the blizzard of the century.

9:05-9:30 Brandon Kling, A Passion For
Cheese

9:35-10:05 Alex Fair, Medstatr “7.5
Billion Candles”

10:00-12:00
Local photographer Kristina Butler will take photos of the attendees in the
lovely Casselman Bridge State Park.Stephanie Diane will be the stylist working with attendees during the
photo shoot.

10:05-10:40 Mark
Scrimshire from
Center for Medicaid and Medicare Services in Baltimore will present a
discussion on patient empowerment and Blue Button.

10:45-11:00Andrew Yoder, Life Coach, Grantsville

11:05-12:00 Mark Boucot, President and CEO of Garrett
Regional Medical Center, an affiliate of WVU, will present on the hospital’s
expansion in the last year and its continued embrace of value based care and
the hospital’s plan to embrace cancer care in Western MD.

12:00-12:45 Lunch and field trip.Some attendees will tour the new cheese
factory during lunch.

Esther Fischer grew up in Sapulpa, OK and graduated from
Oklahoma State University with a BA in Sociology, emphasis in Social Work.
She began her career with the Oklahoma Department of Human Services in March
1997. For the past nine years, she has worked in Adult Protective
Services, investigating allegations of abuse, neglect and exploitation of
vulnerable adults. She has been married to Kelly for 17 years and is the
mother to Kellyn, age 12. She enjoys being an adult leader in her son’s
Boy Scout Troop, actively participates in her church in children’s ministries
and choir, helps care for her aging mother, and focuses on her health by being
a member of a Crossfit group.

1:20 -1:45 Ladd Everitt,
One Pulse for America, Washington DC, Presenting on the financial costs of
treating the victims of gun violence

Matthew Listiak is a filmmaker, bootstrapper, and web
developer. He has worked in healthcare and patient advocacy for the past 15
years with the goals of reducing healthcare harm and giving a voice to patients
through storytelling, websites, and e-learning. As producer of the Discovery
Channel documentariesChasing Zero: Winning the War on Healthcare HarmandSurfing the Healthcare Tsunami: Bring Your Best Board, he travelled the world
capturing compelling stories and developing them into acclaimed television
shows that have inspired positive change in the healthcare industry. He is a
humbled and proud member of The
Walking Gallery of Healthcare. He is currently developing a storytelling
content engine and educational platform called Patient Solutions that will
promote actionable, measurable solutions that are developed by patients, for
patients. When he’s not filming, editing, or otherwise clicking and dragging,
he enjoys growing food, taking walks, and watchingDoctor Whowith his daughter.

In 2011, after her
experience as a patient’s companion, Mélanie Péron, founded l’Effet Papillon, a
social enterprise the aim of which is to create a real social impact on the
lives of patients suffering from cancer, of vulnerable or isolated people and
those who accompany them. Since 2011 the social company has accompanied almost
3,000 patients and today, l’Effet Papillon is a significant partner of the
health community by offering a wellness overall approach to vulnerable and
ill people.

2:30 to 3:00 Jessica
Gada, The Healing Power of Creative Expression & Integration:
An Overview of Art Therapy

Jessica Gada, LCPC, LCPAT, ATR-BC is a Licensed
Clinical Professional Counselor, Board Certified/Licensed Clinical
Professional Art Therapist, and Energy/Wellness Coach in private practice in
Bethesda, Maryland. Jessica was trained in art
therapy and professional counseling at George Washington University where she
focused on trauma-informed care through coursework, research, and
internships at Children's National Medical Center and Walter Reed National
Military Medical Center. Since then, she has worked in the public sector in domestic
abuse and military behavioral health. Prior to her work as a psychotherapist,
Jessica was a licensed Art Educator for grades K-12, when she first learned
about the healing powers of art. Jessica has since crafted a unique service for
DC area professionals and military service members/veterans who wish to engage
in art therapy, mind-body work, EMDR, and psycho-spiritual healing through
creativity and connection.

The Big Tent in field by
the Cornucopia Cafe(3:00- till close of evening Facilitated
Art Project sponsored by the Lilly Clinical Innovation team.John Magnan, Sculpture and installation
artist attended Cinderblocks3 and presented on his cancer and clinical trials
community art concept: A Hero’s Journey.We will continue his work by designing our own blocks for the Hero’s
Journey Project.)

“I love what I do in
assisting, not only our patients, but others from the community in need of health
insurance. We go beyond just helping them with enrollment; we offer benefits
counseling and education, as well as answering questions in an ever changing
insurance world for those in Medicaid and health plans with monthly premiums.”

Married with 2 sons, who are both Volunteer Firefighters with Bittinger
VFD.Lives on the family farm near
Bittinger and is a member of St. John’s Lutheran Church at Red House where she
currently serves as Council Vice President and on other committees

Marsha Goodman-Wood
is a DC-based singer/songwriter, music and drama teacher, mom, and former
cognitive neuroscientist (BA in Psychology, Columbia University, 1994; MA in
Psychology/Cognitive Neuroscience, University of Missouri, 2000). Marsha’s
debut solo album Gravity Vacation contains fun original songs about science
& how the world works. Marsha performs regularly either solo or with her
band, The Positrons at venues and series in the DC/MD/VA area (and occasionally
further afield) that offer family entertainment, as well as museums (including
the Smithsonian National Air & Space Museum), libraries, schools, fairs and
festivals. Website: www.marshagoodmanwood.com

5:00 is
the close of the educational conference sessions.

The Walking Gallery
Gathers 6:00-10:00pm

At 6:00 pm we will gather at the
Casselman River Bridge for a group shot of The Walking Gallery and the
conference attendees. We will then walk across the historic
bridge to the Little Crossings field by Spruce Artisan
Village. There we will have our
evening event under the big tent; this
portion of the conference event is open to the public and does not require
tickets.

6:15-7:30 Terah Crawford, The Terah Crawford Band is based in Deep Creek Lake
Maryland. Combining their love for mountain music with classic rock, outlaw
country and just a touch a folk, they’ve created their own style of playing.
Check them out all over Garrett County, MD and surrounding areas to enjoy their
homegrown Appalachian Folk Rock ways.

7:30-8:15 Ross Martin, MD will sing several of his songs focused on healthcare.

8:15-9:15 Marsh Goodman-Wood will sing in honor of those we lost .

9:15 the final
performers will be fire dancers Christopher Closson and physical therapist and
fire dancer Aaron Smith.

Thank you to our Gold Level Cinderblocks Sponsor:

Conference
Day 3

May 20, 8:00 am meet at Penn Alps Restaurant and Meeting
Center for breakfast and our general session. This day we will break
into small groups to work on mentoring and individual coaching
sessions. General Conference close at noon. Little Crossings will also host
juried artists and local food venders for an Artisan and Epicurean Faire on
this day.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."